Anyone like me out there?

[KayV]

I'm 78 years old and a newbie here. Had my first MS exacerbation on April 18, 1979. Was diagnosed via an MRI in 1989 and by 1995 moved into SPMS and began using a cane. Am now dependent on a wheelchair and a rollator for moving around, My health is good otherwise.

[Hidden]

Hi Kay - I'm younger than you by a few years - just turned 60 in June. Had my first episode at age 36 in 1992. Didn't have a relapse for 15 years when I was 52 which is when I was diagnosed. I'm a nurse and was still able to work at the hospital for a few years but had to give that up 3 years ago. I have a desk job now. Grateful to still be working. I only can walk short distances. I'm fine in a store with a shopping cart I can use as a walker; otherwise I need a cane to go more than 100 yards. I've been in a gradual decline the last 3 years so I don't know where this goes or how quickly. Your story gives me some hope that maybe I'll get a few more good years. Like you I'm healthy other than the MS. Thanks for sharing. Nice to meet you.

[KayV in reply to Hidden]

Thanks, Kerry. Good to meet you also. You give me courage. I'm basically lazy so I don't push too hard to do things. Am in a nursing home and well-cared for. Since I live in south Louisiana, attention today is on the flooded areas and the rising rivers! Pray for us, please!

[itasara in reply to Hidden]

Kay & Kerry, I was 57 when I had first real symptom ( transverse myelitis) and was dx'd by MRI with MS. So this October or November will be 11 yrs. I probably had it longer than I know but nothing bothered me to suggest anything was awry. I've started on Copaxone early following year and am still on it. I am 68 now and do worry in the back of my mind that my MS could progress. So far I am appreciative that I have mobility.

[KayV in reply to itasara]

Glad for you that you're still mobile. I was on Copaxone for about two years but gave it up since nothing changed.

[itasara in reply to KayV]

If you feel your situation is worse rather than unchanged, has your neuro suggested another medication? If you are okay in general, even with some relapses ( that eventually go. Away) it might be a good reason to stay on Copaxone.

[Hidden]

I didn't have a second full blown relapse until 15 yrs after the first one and that's when I was diagnosed. With the first one they thought it was probably MS after ruling out everything else but the MRI didn't show anything. After my diagnosis with the 2nd relapse, I realized I'd been having some symptoms like excessive muscle pain and fatigue after just a little bit of house cleaning but it didn't occur to me that was the MS creeping up on me. The only things I've been offered are tysabri and tecfidera which both have risk of PML brain infection and since I'm JCV + I don't really want to take that chance. If it was at least a chance at a cure maybe, but it isn't. I feel the monster I know isn't as scary as possibly making that monster even worse with a medication that isn't going to cure me anyway.

[agate]

Hi KayV,

I'm 76, diagnosed when I was 39 in 1980, later confirmed by MRIs. I took Avonex for 3 years, then Copaxone for 3 more years and now am not on any MS treatments. Doing OK though I can't walk far and use a wheelchair or walker for distances and the wheelchair for all sitting. I live alone, don't drive, do my own housework and very minimal cooking. I tinker with a few plants, use the Internet a lot, watch movies on DVDs, listen to Talking Books, see my son and his wife sometimes. I feel I'm lucky to have escaped some of the worst features of MS that some people unfortunately have to put up with. I haven't had any seizures, have been hospitalized only once since the diagnosis, and that was for a surgery that had no connection with MS. I have had many falls and a few fractures, though, and all too many infections.